There has been a growing consensus that whatever chronic Lyme disease is it’s not due to the bacteria. This concensus has been based on studies indicating that short term antibiotic treatment following an infection, causes a dramatic reduction in antibodies. That drop in antibody levels is believed to reflect the immune system turning itself off, because of the bacteria, Borrelia burgdorferi, is gone.
This study overturned that idea completely.
Suppression of Long-Lived Humoral Immunity Following Borrelia burgdorferi Infection. Rebecca A. Elsner1,2¤a, Christine J. Hastey1,2¤b, Kimberly J. Olsen1, Nicole Baumgarth1,2,3* PLOS Pathogens | DOI:10.1371/journal.ppat.1004976 July 2, 2015
The Lyme bacteria does more damage than we knew.
Borrelia has developed several tricks to evade the immune system. It can inhibit complement activity and disguise itself by varying the proteins found on its surface. How quickly the infection spreads may be a key factor in how easy it is to suppress. Infections that stay localized are more easily dealt with. Wider spreading infections are more difficult to contain. Studies suggest that adaptive or long term immunity is hard to come by.
Borrelia appears to head straight for the heart of the immune system – the lymph nodes – where, at least in mice, it inhibits the adaptive immune response by attacking the centers of T and B cell production. That, along with the antigen switching, helps explain the difficulty the immune response has in containing the infection.
The Study
First they gave the mice Borrelia. They observed the infection take hold and spread and then they treated the mice with antibiotics. They observed a strong antibody response. That, and antibiotics quickly brought the antibody levels down – suggesting that the infection had been resolved. (Tissue analyses done later indicated that antibiotic treatment had, in fact, vanquished Borrelia. In the non-antibiotic treated mice it was still present.)
Then they dug deeper into the post-bacterial infection stage. At the end of the antibiotic regimen they exposed the mice to Borrelia antigens again. The immune system, at that point, should be able to quickly jump on any hint of Borrelia and mount a huge immune response, but it refused to budge. When they challenged the mice with an actual Borrelia infection, all the mice – whether they’d been treated with antibiotics or not – came down with Borrelia. When they hit the mice an influenza vaccine, guaranteed to crank up the immune system, the antibody response to the influenza was weakened as well.
Somehow, during the initial infection, Borrelia had taken a hammer to the adaptive or long term immune response. Looking deeper they found structural alterations in the germinal centers that produce the long term immune response. Further study indicated that antibody response was significantly blunted, not just to Borrelia antigens – but to others as well.
They continued following the mice. They found significant immune suppression, lasting from a period about one month into the infection to about six months after it. During that period, immune system was essentially wide open to the Borellia bacteria and perhaps to other past infections. It did not respond to vaccines either.
The study found that antibiotics do appear to wipe out Borrelia and the immune system, in mice, at least, does appear to dust itself off after “many months” and get back to work. In the interim, though, people with Borrelia infections may be more vulnerable to further Borrelia or perhaps other infections (including infections that ticks carry.) ( Could Borrelia interfere with antibody response to herpesviruses? Could the immune suppression it invokes lead to herpesvirus reactivation?)
The Post Infection Period
It was a mouse study, but it brought into question some Lyme lab tests.
Researchers are more and more recognizing that the effects of infection do not stop with an apparent vanquishing of the virus. A recent study found that measles infections suppress immune functioning for up to three years. The suppression occurs in a different way than Borrelia. Apparently the immune system gets so excited upon being confronted with measles that it throws all it’s memory cells at the virus – ignoring any other pathogens. The increased death rates seen in the three years following measles infections are not due to measles, but to other infections taking advantage of a weakened immune system.
The reports of post-Ebola fatigue and pain syndromes occurring in some Ebola survivors, are another compelling example of post-infectious problems. We know that cytomegalovirus infections reset the workings of much of the immune system for decades, even in healthy people. The point is that more understanding is slowly emerging of radical changes that can present themselves in the post-infection period. That’s good news for the infectious subset in ME/CFS and fibromyalgia.
Testing Issues
This study introduced more uncertainty regarding Lyme diagnoses – an area that already comes with considerable uncertainty. It found that low levels of antibody titers to Borrelia in the six months or so following an infection are more indicative of a vanquished immune system than a vanquished bacteria. This suggests that antibody tests taken at a doctors office from a month to six months after a tick bite may be largely useless. Tests taken before or after this period, if I’m reading this study correctly, would likely be accurate.
It should be noted that this was a mouse study. While the mice did recapitulate the same up and down antibody responses known to occur in humans, the study findings have not been replicated in humans.
The bacteria is not gone. Oh my gosh. That is such a dangerous supposition.
And to make it even more complicated there are three different forms of this one organism. It has to be hit with different things to attack it in its different forms. Some will pulse their treatment to do this. I’ve been on treatment for 2 years now. This has made a huge difference in how I feel. There are other co infections that go along with Lyme. And new Protozoa being discovered. Diet plays a HUGE part in the success of the treatment. Timing of medicines and supplements is another factor.
Autoimmune dysfunction is the “BIGGIE”. That and inflammation. Get the immune system to working properly and we may feel better. Sadly some of these Protozoa – my doc feels – can not be eliminated. Only controlled.
Issie
Protomyzoa Rheumatica is the one my doc discovered and is researching. He is a bioscientist and developed the stain for this test. It is malaria type Protozoa. His name is Dr Stephen Fry in AZ.
Issie
And the co-infection babesia is also a malarial-like parasite in the blood.
This study was with antibiotic treatment. So my question is, what happens when there is no antibiotic treatment? How does the body respond then? Many have never had treatment not knowing they’ve been infected.
The antibody response (period of immune suppression) is the same whether you’re taking antibiotics or not – the ability of your immune system to recognize past pathogens that you’ve dealt if – if you should encounter them again – is likely suppressed for a time. The Lyme bacteria appears to be able to get in the germinal centers of the lymph nodes where the long term immune response is hatched and alter them early in the game.
If you were infected with Borrelia and you never got antibiotic treatment then the bacteria is still apparently in your tissues – at least according to the mouse study. It disappeared from the mouse tissues after antibiotic were given and was still present in the mice not given antibiotics.
Cort,
Antibiotics are not necessarily effective against Borrelia. After 2 1/2 years years of intensive antibiotic treatment of my 32-year-old case of lyme/Babesia duncani/bartonella (diagnosed for the first 30 years as CFS, then fibromyalgia and Multiple Chemical Sensitivities), there was Borrelia dna in my blood, meaning the antibiotics had not eradicated the infection. The antibiotics are not useless though: they stopped my downhill slide.
Thanks Melissa…good luck on finding something that works.
While this is indeed fascinating and brings into question many of the tests done later, at least as a Veterinarian we test so quickly it appears to not be an issue. Another question would be as mentioned the species specific reactions. Remember that mice are a preferred host for the larval stage of the borrelia ticks so they may have adapted a different immune response. For instance in dogs the long term damage seen is often caused by the immune response in the joints, heart and kidneys where as it seems the mice don’t really mount a long immune response.
A very welcome study that I hope will bring change in treatment, testing, and attitude. A huge plus to the Lyme’s community. This could explain a lot of if followed up, possibly in the related conditions as well.
Thanks for sharing this.
Tim
Susceptible people who have traits for genetic born conditions such as Ehlers Danlos Syndrome with partial incomplete or full Marfans Syndrome or even another connective tissue disorder called
Beales…This no doubt would explain the severity of these ‘undiagnosed’ over looked conditions becoming Chronic, I believe I have the Vascular type of Ehlers Danlos Syndrome it also explains my internal bleeding episodes…
I would like to hear why you think connective tissue issues are the cause of chronic Lyme. I have EDS too and also chronic Lyme and other Protozoa.
Issie
Thanks for this Cort. A bit confused as to the overall immune suppression suggested in this study (of course just in mice). Would that mean the borrelia suppress the immune system so that they would leave a person open to contracting things like colds and flu?
I have supposedly had lyme for at least 16 years and i rarely get such illnesses. Of course that may be due to the battalion of vitamins and supplements i take!
For anyone interested – my experience with lyme/cfs:
Having been on a ‘is it CFS or Lyme?’ roller coaster for the past 22 years, I believe (for today!) that i fell into that 15% or so who didn’t get adequately healed after being treated for Lyme. My overall health was probably already off from stress, childhood issues, etc., when I got a bull’s eye rash in 1993 (in NJ where I lived in the woods with my dog). I was immediately treated with abx. However, the symptoms (fatigue, joint and muscle issues) suddenly appeared months later. I was treated with abx again and the symptoms quickly disappeared. Unfortunately, the symptoms reappeared months later. This time, the abx did not work (one month of doxycycline) and since the lyme test was negative, it was declared i had CFS.
This was in 1994 when it was supposedly exremely possible to get negative lyme tests.
Fast forward to 1999. I was still sick and a new doctor did a western blot where the IgM was CDC positive for lyme. This doctor wanted to be sure, so he did a brain scan (MRI) as well as a spinal tap, which did not back up the western blot. So, again, CFS was the diagnosis.
I’ve since read that MRIs and spinal taps can also false negatives. (Does it ever end with these researchers?)
It’s certainly possible I got reinfected by ticks in NJ, but in 2001 I moved to Florida so I doubt I would have been reinfected since then.
In 2013, my ongoing fatigue became extreme (bed ridden) and so it was off to doctors and internet for answers. This was when i went into menopause and I’ve read that Lyme spirochetes flare when estrogen drops. (Many female lyme patients report symptom flares with menstruation). So I recently had another western blot and it was again IgM positive for Lyme.
As i write this i am on a regimen of Plaquenil, Biaxin and nystatin to treat long term lyme. We’ll see…
I don’t know if they’ll solve this problem in my lifetime. But it seems more and more doctors and researchers are getting on the bandwagon to do so.
My doctor confirmed that I had both CFS and Fibromyalgia, and said, “I suspect a long-term disease is causing them. Let’s test and find out what that disease is.”
I tested positive for the Bb spirochete.
When I learned about the symptoms, I said to myself, “Oh, that’s what I’ve had for (at least) 30 years.” However, I was never bitten by a tick.
I think the percentage of people who do not get well after extended antibiotic treatment must be much larger than a mere 15%.
I had Lyme disease, tested positive, went on iv doxycycline (sp?), never had a bulls eye but was definitely had Lyme. Possibly you were bitten but didn’t know it.
Ticks come in many species and sizes; ticks commonly now are the size of a sharpened pencil point dot. No one can see them or their bites, for the most part. Lyme is epidemic in Florida and worldwide due to the disturbance in natural habitats; some of this info comes from Dr. Kerry Clark of the U of North Florida, a researcher who found tiny Borellia-infected tics under the gills of the little green lizards we so know and love in Florida — the same ones eaten by dogs, rats and other mammals. CDC info on Lyme and its many co-infections is about 30 years behind the times, same as SEID/ME/NOIF research. And the immune docs are so swamped with survivors of all related Neuroimmune Diseases that they cannot keep up with research.
When abx continue to fail and destroy the gut-brain microbiota so that the immune system further falls into high overdrive or plots altogether, a very skilled Naturopathic doctor or MD/DO with herbal skills has been known to keep quality of life going, and some people do completely recover. When orthodox Western medicine fails, it is time to think outside the box after carefully vetting the best of the more nature-oriented practitioners. Lyme re-infections are very common, and Roundup and other pesticides in homes, on golf courses, etc. have helped boost the immune strength of ticks and other disease vector carriers.
People with Lyme rarely get colds because the immune system cannot launch a proper symptomatic response due to the immune suppression.
I have tested positive for Lyme twice in last three years, having a number of symptoms, at times I feel better and hope that’s the end of it to then crash back down with extreme fatigue and flare of various symptoms that come and go. But I heard many times that some don’t get colds and flu … I seem to get a lot mainly chest and cough type infections including last year fairly ill with bacteria pneumonia. Why is it some suffer and other not from cold/flu illnesses?
Anecdotally, what I hear from almost all individuals who define themselves as having either “chronic Lyme disease” or “post Lyme disease syndrome” is that they already had substantial illness symptoms (e.g. fatigue, cognitive issues) prior to getting sick with Lyme, and that their illness just got permanently much worse after getting bitten by the tick.
This is similar to what I also hear from almost all ME patients, which is that they had this same sort of milder illness prior to coming down with whatever kind of infection (e.g. mono, killer flu, etc.) that knocked them permanently into severe illness.
if indeed it is the case that most or even all chronic Lyme and ME patients were already substantially but relatively mildly sick before getting the infections, the a question is: what was causing that milder illness?
Maybe whatever it was made them more susceptible to permanently being affected by the infections.
I agree that it’s probably much more complicated than just getting hit with a bug.
Not so Lisa!!!
While my immune system was probably not as strong as it should have been from stress, I was extremely active and seemingly healthy prior to the tick bite. I did 4 aerobic high intensity classes a week, roller bladed, snow skiied, worked full time and did it all as a single woman.
I was hit with the tick bite at age 30 and the symptoms were sudden and severe.
I also have heard and read many stories of Chronic Lyme in which the people affected were highly active prior to getting sick. One example was Katina Makris who wrote, “Out of The Woods.”
People who don’t realize they have Lyme until its late stages have a long hard battle on their hands. And those of us who weren’t adequately treated can also have a long road.
Many doctors miss the diagnosis because so many Lyme tests give false negatives. Many patients therefore end up lingering with it for long periods before a proper diagnosis is made.
I had no illness before Lyme. No symptoms. I was 17, healthy and active. I know hundreds of chronic Lyme patients with similar histories. It’s in very poor taste to post a comment like yours.
Agreed.
Agreed.
Initially I thought it was a Fibro flare until my knees swelled, right one had 10ccs of fluid removed. I was then tested and was positive. I can pinpoint when it likely happened as i had a dog that got itself lost in a swamp. I had to get in the tub with her to bath her. It was about 2 months later when my knees swoll although i had other symptoms that I attributed to fibro flare. I know my immune system was crap for several years. I thought it was the antibiotics. This was in 2000.i still have Lyme arthritis in my right knee, occasionally a flare that doesn’t feel like Fibro.
I think you are absolutely correct, especially when it comes to an older person getting a Lyme diagnosis… which by that time is chronic Lyme. I was 59 when diagnosed. My immune system was shot. I had progressively gotten more ill and for years doctors had told me my symptoms were because I was “getting older.”
For many years, I envisioned my immune system as being quite strong, fending off colds and flu…. although I would be periodically attacked and it would take me three or more months to recover from bronchitis.
I asked my (Lyme) doctor why I always had crud in my larynx, for at least 20 years, and he said it was caused by a long-term infection. My painful fibro symptoms went back 30 years. And my brain’s “non-reality” symptoms went back 45 years.
Some immuno-suppressive invader is, no doubt, already within the body. A percentage of the population can hold it at bay with strong immune systems. Others can hold it at bay until they are infected with a disease like Lyme, or have some other major stressful event when brings them down.
Remember: you don’t have to be bitten by a tick to get Lyme disease. Lyme is borellia burgdorferi, and there aren’t tests to determine if you are infected with other species of borellia. Lyme tests are unreliable because the system protects the health insurance industry.
My daughter is 14 and was a healthy, active kid before she started having symptoms. Never sick. She was just recently diagnosed, so we are reading and learning as much as we can.
Good luck Shannon
The testing is so inadequate that there is a law in Virginia, “the Lyme Disease Testing Information Disclosure Act. Under the law, patients being tested for Lyme disease must be officially informed that a negative test result does not mean they don’t have Lyme disease.”
I had many negative Lyme tests from 2011-even Oct 2014. I was then diagnosed with CFS by Dr E in NY and Dr M at Stanford. I met the Fukada criteria and my NK cells were non-functional.
This past Jan, I had a CDC positive Lyme IgM WB from Labcorp. I feel that the CFS treatment strengthened my immune system which made an antibody response possible.
I am now on IV antibiotics based on Zhang’s Lyme disease persister cells study out of Johns Hopkins. I am making some progress.
Lyme weakens the immune system, causing little to no antibody response. While the Lyme spirochete stealthily does its damage.
A very weak immune system doesn’t catch every bug that comes around. In our cases, very weak immune systems don’t give the specific fight response because they are too weak to even notice the bugs.
In my case, I will have whole body immune responses to infection, but have no way to know if it’s strep, a UTI, etc, because I get no specific symptoms at the site of infection.
I think Dr Richard Horowitz’ 16 point MSIDS model in “Why Can’t I Get Better?” is spot on. It’s not solely Lyme or viruses or mold or autonomic dysfunction…it’s many of the above. Each person has to determine their specific pieces of the puzzle that must be addressed.
If you just treat viruses and don’t address the other nails in the foot, you’re still gonna have pain and think your on the wrong course completely.
That’s why I bet so many of Corts articles resonate with all of us…we have more than 1 nail in the foot!
Amen Angela. Well put.
Issie
Hi Angela,
In case you check back here, what exactly did you do with the doctors at Stanford that helped your immune system?
Hi Kira,
I was put on Valcyte which I couldn’t tolerate. Same result with Acyclovir.
I ended up on Valtrex and was advised to: 1) get my local Dr to Rx an anti-inflammatory (I’m on Salsalate as Celebrex didn’t agree with me)
2) stop pushing myself as it could do permanent damage
3) consider a wheelchair to conserve energy.
I rented a wheelchair, but only used it during the worst flares.
As you can see none of the above was magic. After a 2 year wait, I went there expecting all the lab tests and medical bells and whistles known to man. Didn’t happen.
I do feel that lowering my viral load helped my immune system notice the Lyme bacteria and put up an antibody response.
Hope this helps!
This chronic immune suppression we — with Lyme, ME, FM — experience, allows the Herpes family to get out of control.
It sounds as though you have had the best results with a drug which treats the Herpes family, plus an anti-inflammatory.
I also treat with 3 Acyclovir per day, just to keep the Herpes family tamped down. If I didn’t take acyclovir, along with an adequate desiccated thyroid dose, I would not be able to get out of bed.
No place is safe. I got Lyme in 2011, while working in the state park system of Florida. Like most, I was misdiagnosed for a few years, then found an MD with some knowledge. Under treatment, but still sick…
If testing (chronic) Lyme is so inadequate how can you even diagnose this disease at all…. How do you know you have it ? It is then impossible to say you have (chronic) Lyme. I don’t believe in the chronic lyme story. The Meirleir said that 90% of the ME/CfS-patiënts have chronic lyme. It is a hoax just like XMRV. I do believe that some people with ME/CFS have lyme but not 90%. It means that ME/CFS doesn’t exsist at all.
What if he is right and your last statement is true??????? CFS is based on symptoms. There are abnormal markers in both illnesses and they could overlap.
Issie
I would like to see the evidence that 90% of the ME/CFS patiënts have (chronic) Lyme. There are no specific markers for Lyme found by the Meirleir. He isn’t right and this will damage his reputation even more. I But let me be wrong then the mystery off this illness is gone…
Gijs –
You should read, “Why Can’t I Get Better?” by Horowitz and educate yourself on Lyme and multi-systemic illness before being so sure that chronic lyme doesn’t exist. (Horowitz has treated over 11,000 patients in the last 25 years in a Lyme endemic area).
Lyme experts have all agreed that there are now 2 labs, which accurately diagnose Lyme (Igenex and Labcorp). (Igenex btw has passed strict testing guidelines for New York State and California and is certified by the US gov’t through CMS -center for Medicare and Medicaid Services). I was found to be positive from Igenex.
Unfortunately few of your average MDs are familiar with Lyme or any of the discoveries made about it in recent years. These undereducated doctors therefore have labwork sent to commercial labs which can still give false results.
Also, many, many patients with chronic lyme are back to 100% or nearly so following long term antibiotics.
The reason it is considered chronic is that the spirochetes go dormant (they protect themselves in a cyst form) until the environment (blood, tissues, etc) becomes more hospitable, at which point they reactivate.
One example of the way the environment changes is a drop in estrogen (as happened to me). Other things that change the environment include severe physical (e.g. a car accident) or emotional stress.
Until more cfs patients are properly tested, we won’t know the percentage who actually have Lyme.
Kira, tell me; what is properly tested if there isn’t a validated test for chronic lyme? Indeed we don’t know the percentage of CFS/lyme patiënts, thus the statement of the Meirleir is bull… you said yourself. The whole story is contradicted. Horowitz seriously? Did you forget the XMRV hoax?
Gijs – first this is not a place for sarcasm. This is a place to share our ideas.
First off, MXRV is not mentioned anywhere in Horowitz’s book.
Second, the person responsible for the XMRV debacle was Judy Mikovits and her researcher Frank Ruscetti. See:
http://discovermagazine.com/2013/march/17-shadow-virus
Horowitz’s 500 page book is well researched (with numerous cites for each chapter), in addition to its sharing of Horowitz’s considerable experience. He is not just a Lyme guy but looks at various factors in play with chronic undiagnosed illness.
That said, given the paltry funding for research of CFS, ME, Lyme and the like, we’re all going to have to be a bit more open minded since they are all complicated illnesses with various factors adding to their degree of severity.
It is not sarcasm and i don t say Horrowits wrote about XMRV. Don’t put wordt in my mouth. Secondly it is the place for ideas and opinions’. If you don’t like my opinion or ideas, it is fine by me, i don”t like yours either. But i don’t care it is just your idea.
Gijs, most of the time the disease has to be diagnosed by symptoms. And is much easier to diagnose by symptoms of you have in fact been bitten by a tick. It’s very sad that the test are so inaccurate. Why even have these test since they are so inaccurate? I think that the Lyme comes first then the CFS/ME. I am from the East Coast of MD. I can say for sure the Lyme is an epidemic! I know so many young(teenagers), that have had one to numerous tick bites and now feel so fatigued all the time. Most of them, if not all have the diagnosis of CFS or ME or Fibromyalgia or all of those because the doctors are so afraid to treat them for Lyme or say it Lyme after treating them with antibiotics. Many doctors who treat a person for Lyme get a lot of scrutiny. My (last) doctor is no longer allowed to practice because he was prescribing pain pills to those in pain. Chronic Lyme brings about so much joint pain. I’m not sure how you can say that Chronic Lyme doesn’t exist! If a healthy person gets bit by a tick, has the bullseye rash, gets treated with antibiotics and never recovers to their previous state of health, then what do you consider that? I consider that chronic/post Lyme! yes people also can have CFS, ME and/or Fibromyalgia without having Lyme too. But Chronic Lyme does exist and is devastating. Hopefully you(Gijs) or someone you care about will never have to go through what a person with CHRONIC LYME experiences on a daily basis.
I hope you or somebody you love won’t get through what i am after 20 year of illness… How you know you have chronic lyme if there is no test? Explain that to me. You can also have severe ME just like the most people here.
I have been sick for over 18 years. I was diagnosed with with Lyme disease. I did the antibiotics after the tick bite. Got better for awhile then all the same exact symptoms came back. Then came the diagnosis CFS/ME, fibromyalgia and idiopathic hypersomnia. Since I had the tick bite and now have the same symptoms back as I did when treated for Lyme then that’s where I consider that I have chronic Lyme! Yes that is just my opinion. When I have gone to doctors that don’t believe in chronic Lyme, they say it’s all the other disorders mentioned. When I go to a doctor that believes in Lyme, they consider it chronic Lyme. This is all just my opinion. I’m no doctor. It’s just very ironic that I was in perfect health then bit by a tick and now 18 years later I’m having the same exact symptoms. Where you ever bitten by a tick? What do you think that you have? I feel very bad for you to be suffering as I am. It really sucks and I think that we all just want a clear diagnosis that can also be treated so we can enjoy life again!
Note: there’s a high probability that “Gijs” is a stalker of Lyme forums who repeats the same thing over and over about “how do you know you have Lyme if there isn’t a positive test?’
He does not acknowledge that chronic Lyme exists, and prods us Lyme sufferers to be reactive to his statements.
Response to testing… First, for thousands of years, human diseases were identified without the use of tests.
Second, why are there no accurate tests for Lyme? HIV, for example, is 95% accurate with a simple cheek swab.
I only read and post sometimes on ME/CFS forums. I am not interested in lyme. Some ”chronic lyme” patiënts can get really angry if somebody doesn’ believe in there chronic lyme as a cause for (90%)ME/CFS.
Note: there’s a high probability that “MontanaNAR” is a stalker of ME/CFS forums to spread the chronic lyme hype.
In your case if you have had ”real” lyme it is possible. I agree.
Lyme is a clinical diagnosis. “I don’t believe in the chronic story”. Quite an insensitive comment.
It is not insentive, i said it also with XMRV. Ït is ridiculous to say that people with ME/CFS (90%) have chronic lyme disease without any proof. It is also unethical because many “ME/CFS patiënt now believe -just like XMRV- they have chronic lyme. That is insentive to me. I do believe some patiënts have lyme but not 90%. That is my statement.
XMRV was not a hoax.
The retrovirus “theory” is a sound one.
Something is suppressing the immune systems of millions of people around the planet. Is that something a retrovirus? An animal virus? Or another unknown organism?
Now the research must be done to determine what that something is and how it is transmitted.
Of course, that is, if the health industry actually gave a damn about curing people. Instead they prefer to make their gazillions from people who are chronically sick for years.
You may not have done adequate research to back your assertion. Because of the ineffective tests out there, Lyme doctors (ILADS experts) for decades use extensive observation, client interviewing and clinical diagnosis. There is too much research easily located by many of the world’s top physicians backing this and reporting the numbers of those affected the difficulties with government agencies covering up said issues, just as they have done with SEID/NOIF/NEID/ME etc.
By invalidating what you might not have thoroughly researched and proclaiming Chronic Lyme a hoax, you have by proxy invalidated your own condition as bogus, which others would cite as a hoax (and often still do) using similarly dodgy scholarship. No definitive test exists for NEID/ME either, but somehow you seem to have missed mentioning that. BTW, Dr. Klimas seems to be very fond of some of Dr. Meirleir’s work. Many conditions overlap and ME/Chronic Lyme are two of them. One does not rule out the other by any means.
Could this suggest that Lyme disease is one of T1 dominance more definitely now?And with antibody responses so blunted,it could explain why we have no auto-immune or inflammation markers?I know we are talking mice here but I feel this study to be really significant.
Gijs, most of the time the disease has to be diagnosed by symptoms. And is much easier to diagnose by symptoms of you have in fact been bitten by a tick. It’s very sad that the test are so inaccurate. Why even have these test since they are so inaccurate? I think that the Lyme comes first then the CFS/ME. I am from the East Coast of MD. I can say for sure the Lyme is an epidemic! I know so many young(teenagers), that have had one to numerous tick bites and now feel so fatigued all the time. Most of them, if not all have the diagnosis of CFS or ME or Fibromyalgia or all of those because the doctors are so afraid to treat them for Lyme or say it Lyme after treating them with antibiotics. Many doctors who treat a person for Lyme get a lot of scrutiny. My (last) doctor is no longer allowed to practice because he was prescribing pain pills to those in pain. Chronic Lyme brings about so much joint pain. I’m not sure how you can say that Chronic Lyme doesn’t exist! If a healthy person gets bit by a tick, has the bullseye rash, gets treated with antibiotics and never recovers to their previous state of health, then what do you consider that? I consider that chronic/post Lyme! yes people also can have CFS, ME and/or Fibromyalgia without having Lyme too. But Chronic Lyme does exist and is devastating. Hopefully you(Gijs) or someone you care about will never have to go through what a person with CHRONIC LYME experiences on a daily basis.
My point is when tests are so inaccurate and symptoms of lyme are the same as many other diseases like ME/CFS, how do you know it is chronic lyme?, it doesn’t make any sence. Maybe you have a virus or something else , you don’t know. That is the problem.
Something to think about: ‘Otzi’ the 5000 year old iceman had Lyme disease.
From Wikipedia:
“DNA analysis showed the presence of the DNA sequence of Borrelia burgdorferi, possibly making him the earliest known human with Lyme disease. A later analysis suggested the sequence may have been a different Borrelia species.”
This is not a modern disease. The fact that the iceman had Lyme disease makes me wonder if we all have Lyme but only those who are predisposed will exhibit (CFS/ME etc). What is modern though is the constant stress we are all under. Did the iceman have CFS/ME I wonder? One observation is that he must have been more fit than us as he was able to walk the mountains carrying a copper axe.
Buk – in case you check back, do you mind sharing the name of the doctor treating you?
There may be some difference between mouse and human, but won’t be very huge.
I am ill with Lyme from 8 years, diagnosed only few months ago, I have chronich fatigue and I am bedridden. I am looking for the best Lyme doctor in the USA can you help me giving the
name ? Thank you in advance if you will help me.
Cecilia
The Jemsek Specialty Clinic in Washington D.C. is pretty good. In addition to antibiotics they break up biofilms with lactoferrin and xylitiol. They attack other co infections like Babesia with anti malaria medicine. Pretty good all around approach. In addition to Jemsek, detoxing with a far Infrared sauna works well. Exercise is also critical using Dr. Burrascano’s approach.
Chronic Lyme disease is not solely about the spirochete (and its multiple forms).
Yes, chronic Lyme it is a disease complex with a wide range of co-infections. However, if you treat for the spirochete and multiple co-infections, you may seem some improvement for a while.
The older you get, the more likely you will see improvement for a while and then have a relapse.
Most of the people who report being “cured” and resuming an active lifestyle are younger. And there are plenty of younger people who never recover.
I think chronic Lyme, ME/CFS and Fibro are all the same disease. They certainly have the same symptoms. And that disease is a malfunction/dysfunction of the immune system. Something has caused the immune system to be wiped out.
With the tools and tests available, chronic Lyme can be treated in the manner of the Horowitz/ILADS model, but few people completely recover longterm with no additional treatments needed.
Many people treat and treat and treat until they run outta money. And then they drop out of the statistics and it would be wrong to assume they have been “cured.”
——I keep trying to get off forums and here I am again.
I’m on a regular webinar from a doc on Lyme. The latest info he is putting out is he doesn’t feel we will completely get rid of this. With stress or other illness it can deactivate. It goes into dormant stages and the circumstances get right and it morphs into another stage.
The Protozoa that Dr Fry has discovered he has not found anything to eliminate it. It is only controlled. It is a careful balancing act this one. It can be gotten from mosquitoes and has malaria type symptoms. Treated same. Yet life long. This treatment addresses the autoimmune system and inflammation. It is giving me my life back.
I too have thyroid issues. These organisms can get into organs and cause dysfunction. I think this may be what gave me the kidney issues. (I was in stage 3 now stage 1 chronic kidney disease.). Becoming low fat, whole food vegan. Was the number one thing that helped the most. My doc says he has had some just do diet and keep things at bay.).
I have been off my doxy for a month now. Feel I need to go back on. Some symptoms presenting. But, most I’ve talked to find pulsing therapy best as when they morph into other stage easier to kill them.
I do think this is more widespread than we know. I test positive at Labcore for Lyme and coinfections. And positive for this other Protozoa Dr Fry has found. He feels this one is even more significant in illness than Lyme. May be more widespread and is not recognized yet by to many others. What he has me doing is making a big difference.
Issie
Here is a really encouraging video no matter what the illness and how key a role diet plays.
http://www.youtube.com/watch?v=_k3B0y0tjCg&sns=em
Issie
The signs of CFS/ME are the “symptoms” of this illness. Just like the symptoms of POTS has POTS as its defining label. Accepting the definition of an illness based on symptoms is not definitive. Many of CFS/ME and POTS symptoms overlap. Even the scientific markers of dysfunctional reactions within symptoms of the body can be measured in both illnesses. We know there are markers, we know there is dysfunction. We also know that we can lump a bunch of people together based on their symptoms and put a label on them. And then say there are different subsets based on those symptoms and maybe some other body response differences. But this isn’t getting to the “CORE”. It’s still describing the symptoms.
With Lyme disease there is a known pathogen. A visible, tangible organism. You can lump those people together based on their symptoms too. But it has a known cause. The question is WHY does this organism cause issues in some and not in others. To get to the core on this one – it points to the autoimmune system. If it were working properly it would fight off this organism.
We can’t let the symptoms of an illness and the label attached to it – be what we accept as the reason.
LYME = pathogens = inflammation = faulty immune system
POTS = Symptoms = ??????
CFS/ME = Symptoms = ??????
My guess to those equations is also faulty autoimmune response.
No, we well know the SYMPTOMS -we live with them daily too. We just refuse to let that be the end and accept them based on the label that has been given those symptoms. We want to get to the “CORE REASON” for those symptoms. I can talk all day long about this study or that study and what it determined to find being wrong with this marker or that marker. That just helps to define the symptoms. It takes all of that to make the whole picture. We need that research too. But what is the bottom line and what CAN we do about it.
We can do things on our own – right now – to address inflammation and the autoimmune system. It may not take care of all the symptoms. But it may address them and make things better. Do what we can to address what seems to be the issue. If there is something known to cause an issue (Lyme or other things – virus, bacteria etc) address them. But the main thing is trying to get the body to function properly so it will attack things on its own. And THEN there won’t be any symptoms.
——–This is my approach and I’ve had issues since I was Very young and am now in my 50s. This IS making a difference for me.
Issie
And while we are on the subject of Lyme, here are a few more things to muddy the water. I have been found to have a mold/fungal issue. I was exposed for over a year and that’s when I crashed from being “mostly good” to not. They also think there may be some heavy metal issues.
I’m still in the learning phase of testing and treatment. But I’m starting to feel better. There is a test that you can do online (it’s $10) that is showing very accurate results to biotoxin illness. The guy who created this test has suffered with these things too. He has been very instrumental in my education. I’m jazzed and honored to have found him. THANKS, Brian!!!!!
https://vcstest.com/
Surprisingly, many people with unexplained illness may have mold and heavy metal issues. And it’s not unusual, I’m learning, for there to be environmental sensitivity (allergies).
Here is a podcast of one of the people I’m learning from. The owner of the podcast and the scientist he is interviewing has been very enlightening.
https://thequantifiedbody.net/quantifying-your-mercury-burden-dr-chris-shade/
The health quest continues.
Issie
Good luck on it!